What are we doing?
We’re working to find out the contribution that family carers make during end-of-life care. Carers’ contribution is likely to substantially increase in the last three months of life and currently there’s no quantification of the size and economic impact of a carer’s contribution: it remains largely ‘invisible’ at government, commissioner and service provider level.
Why was it important?
Previous research in this area indicates that end-of-life carers feel unheard and unsupported; often palliative home care services do not recognise the importance of carers as co-workers and do not support them sufficiently to support the patient. Providing information on end-of-life caregivers and what they contribute will promote their visibility to commissioners and service providers which can enhance support for carers. This information is needed to plan and invest in carers to help them support patients, particularly as the delivery of care continues to move into the community.
How did we do it?
After analysing and reporting on the survey results we now have a profile of the cancer carer population. We are still working with the data but hope to soon report:
- An estimate of the financial value that the care given by family members contributes to society.
- Which types of carers may be most in need of support.
Of those who responded to our survey, 44.5% were the spouse or partner of the person being cared for, 50.6% lived with the patient and 33.7% lived within 30 minutes of the patient. 53.7% were employed at the time, and 36.4% were retired. The majority of participants were female (64.2%), white (95.7%), with a median age of 60 years.
Our main findings are that:
* Carers spend an average of 69 hours and 30 minutes per week caring for their loved one in the last three months of life, which represents a massive caring commitment. This time commitment resulted in changes to employment hours and subsequent loss of earnings for many carers.
* Carers are 5-7 times more likely to have psychological health problems (e.g., mental health issues, anxiety, distress) than people from the general population.
* The overall health of carers was lower than the general populations’ and that this was particularly so for younger carers.
In addition to this, we have also found that there are significant financial burdens for carers: 76.1% of carers reported spending money out of their own pockets during the last three months of life. Costs such as private nursing care, medication, equipment, child care and respite resulted in an average £370 out-of-pocket expenses per patient on top of the care that is already provided by NHS and other free services.
We can see from these results that caregiving puts a substantial strain on people’s health and that this happens on a much larger scale than we originally thought. Given this, we need to work with care agencies and social support services to ensure carers are better supported and able continue their valuable work. Our findings also show that the financial cost of informal caring is higher than has been previously estimated and we can now more accurately estimate the full economic value of family caregiving in the UK.
We will update this section with more results in 2018-2019 as they become available.
Local and national impact
This is the first study to provide population-based information on the scale of cancer-related carer activity and out-of-pocket expenditures, to enable the economic value of carers’ contribution to end-of-life care to be calculated. Importantly, this study identifies that carers’ financial contribution to end-of-life care is substantial and could be much higher than some previous estimates suggest. The importance of this work is highlighted by the local and national exposure that the findings recieved:
- Prof. Gunn Grande and Tony Bonser (Dying Matters and NCPC Patient Embassador) discussed the work live on BBC Breakfast
- Prof. Barbara Henratty spoke to 7 different regional BBC radio stations
- Jonathon Dimbleby discussed the findings from the work live on Good Morning Breakfast (on ITV)
- The work was featured in a number of local and national newspapers and e-circulations.
The importance of this work well illustrated by Chair of Dimbleby Cancer Care, Broadcaster Jonathan Dimbleby
“The research by Professor Grande and her team illuminates a really grave issue. I have had personal experience of caring for someone with terminal cancer. It is draining in every way. Through the work that Dimbleby Cancer Care does, we know how vital informal care is and the huge economic contribution it makes to the NHS and social services. Building on research like this, the work we support at our cancer centre in the Guy's Cancer Centre helps to ease the burden on patients and carers in a wide variety of ways… It is a very important and challenging task.” (April 2017)
For more information about the exposure this piece of wok received please read Chrstine Rowlands' blogspot below.
Who did we work with?
University of Manchester
Funding was secured through Dimbleby Cancer Care.
- News Stories
When Dimbleby came to breakfast; talking end of life care at the BBC - Christine Rowlands (April 2017)
Family cancer carers deserve the role of expert partners in caring - Rebecca Spencer (July 2015)
Grande G., Rowland C., van den Berg B & Hanratty B., (2018). Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey. Palliative Medicine, Vol 32(10).
Rowland C, Hanratty B, Pilling M, van den Berg B & Grande G., (2017). The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliative Medicine. Vol 31(4)
Levels of Psychological Distress and Predictors of Distress in Family Carers of Patients with Cancer at End of Life - Grande G, Rowland C, van den Berg B, Batistatou E, Hanratty B
More detailed information on the rationale and research methods employed are available in the Research Protocol.
For further information please contact Michael Spence (Programme Manager)